Mom died at home of cancer, and Dad from a brain tumour, while in Long-Term Care. Part memoir, part research, the book includes coping strategies, and information I discovered about the health care system. Living and Dying With Dignity covers what happens after the diagnosis. Many have written success stories, but how do you cope when cancer or a brain tumour returns, especially as a caregiver? What are your rights?

Wednesday, September 27, 2006

Communication?

There are two emergencies at the Long Term Care Facility this morning and Dad is late getting up out of bed. Brian reports that he is alert and feeds himself, which is a good thing. I do not know how Brian finds the patience for all of this. He never knew his father. He’s never been a father, although he is a wonderful stepfather. He tells me his arm gets tired and his back hurts from sitting at a difficult angle in order to feed dad. I am so proud of him.

Dad takes three pills at 8:00 a.m., and takes them easily from Hannah, the young, attractive charge nurse. She tells Brian that he ate his hamburger yesterday. Dad and Brian talk about hockey. His noun retrieval is better this morning. Yet, he is telling Brian that there are two dogs that don’t like him. He is talking about a dog named Barbados. Can this mean Bandy? We do not know. He tells Brian that he is “stupid and cannot get the word.” This is what he started saying in previously when he is in The Manor – that he is “stupid”. He has forgotten that the brain tumour is taking his mind. Dad groans a lot when he is moved.

Brian lets him do everything he can, which gives Dad confidence. When Brian puts on dad’s bib Dad is unhappy with that. He put it on his lap, instead. Brian knows Dad is late for breakfast and he put dad’s robe on backwards, in order to get him down for breakfast in time. After lunch Brian washes Dad’s beard. Dad uses Brian’s proper name several times and thanks him for coming in. His hearing is particularly bad today. As we visit we continue to talk to him as if he can hear. It gives some semblance of normality.

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I cannot provide specific health information, but I have made presentations to Ontario's LTC Family Councils, NSM Palliative Care Conference, caregiver support groups.

My book has been donated to various libraries across the province.

Living and Dying with Dignity.--a daughter/caregiver's point of view. My mother's cancer (leukoplakia), dad's brain tumour and subsequent dementia changed my life. The book includes information, research, as well as coping strategies from real-life experiences.

Book Content

Endorsements and Buzz

"I have just finished reading Living & Dying with Dignity. I wanted to touch base with you & thank you for this book. I think it was time someone wrote an honest, heartfelt experience on this subject. I worked in LTC for many years, until 2 years ago at a LTC facility as a HCA/PSW. My experience & what your experience was with your Dad really hit home. The “burnout” for me started shortly after my Mom passed away in a Palliative setting in a hospital in Strathroy…………………it was not really a good experience ."

"Life lessons and individual work-life experience as well as the experiences of others in caring for those who are dying ar an enhancement to the skills that staff have acquired through education training. Your book will be a valuable resource for staff and family members who provide care to patients within our hospital for many years to come."
SMMH
"Enclosed is a cheque for the book 'Living & Dying With Dignity.' I have enjoyed it very much, thank you for your kind words. It was really interesting reading it from the families point of view. Some valuable lessons are included in the book and the difficulties of the health care system. Thank you for caring enough to put it in print.All the best in 2009."
Gay Pengilly RN
General Manager: Gravenhurst Manor"I think your book will be useful for our various College and University programs dealing with healthissues, aging and family.First hand accounts, such as yours, offer researchers the qualitative information that is valuable toa study - not to diminish the personal experience - but it also has research value."
Lynne Prunskus BA, MA, MLS
Associate Director, Library Services
Nipissing University
Live-in Care.org has a feature on my book

Jilks' blog has good general health care information. She wrote a book which I reviewed on this site titled Living and Dying with Dignity. ...

Book Donations

We have donated books to various groups: local small libraries, hospice organizations, and well as door prizes for various cancer and palliative care groups.
Jennifer donated a copy to Sandra Winspear (ED), as well as local libraries, Muskoka Victim Services, Long-Term Care & Retirement homes.
Contact me for information.